The Experiences of Older Adults Living With Inflammatory Bowel Disease: A Scoping Review.

The prevalence of inflammatory bowel disease is rising in persons older than 65 years. Although there is extensive literature on inflammatory bowel disease in older adults from a disease-related outcome, epidemiological, and treatment perspective, the older adult perspective on inflammatory bowel disease-related care needs and experiences is not well represented. This scoping review examines the existing literature regarding the care experiences of older adults living with inflammatory bowel disease. A systematic search was conducted using 3 concepts: older adults, inflammatory bowel disease, and patient experience. Seven publications met the inclusion criteria. Reported data include study design and methods, sample characteristics, and findings relevant to the research question. Two themes were identified: preferences for interactions with healthcare personnel and peer support networks, and barriers to accessing care for inflammatory bowel disease needs. An overarching concept across all studies was the need and request for individualized, patient-centered care where patient preferences are considered. This review highlights the need for more research on the older adult age group to guide evidence-informed practice that meets their individual inflammatory bowel disease care needs.

A scoping review of ageism towards older adults in cancer care.

INTRODUCTION: Ageism towards older adults with cancer may impact treatment decisions, healthcare interactions, and shape health/psychosocial outcomes. The purpose of this review is twofold: (1) To synthesize the literature on ageism towards older adults with cancer in oncology and (2) To identify interventions that address ageism in the healthcare context applicable to oncology. MATERIALS AND METHODS: We conducted a scoping review following Arksey and O'Malley and Levac methods and Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We conducted an exhaustive multi-database search, screening 30,926 titles/abstracts. Following data abstraction, we conducted tabular, narrative, and textual synthesis. RESULTS: We extracted data on 133 papers. Most (n = 44) were expert opinions, reviews, and letters to editors highlighting the negative impacts of ageism, expressing the need for approaches addressing heterogeneity of older adults, and calling for increased clinical trial inclusion for older adults. Qualitative studies (n = 3) described healthcare professionals' perceived influence of age on treatment recommendations, whereas quantitative studies (n = 32) were inconclusive as to whether age-related bias impacted treatment recommendations/outcomes or survival. Intervention studies (n = 54) targeted ageism in pre/post-licensure healthcare professionals and reported participants' improvement in knowledge and/or attitudes towards older adults. No interventions were found that had been implemented in oncology. DISCUSSION: Concerns relating to ageism in cancer care are consistently described in the literature. Interventions exist to address ageism; however, none have been developed or tested in oncology settings. Addressing ageism in oncology will require integration of geriatric knowledge/interventions to address conscious and unconscious ageist attitudes impacting care and outcomes. Interventions hold promise if tailored for cancer care settings. 249/250.

Integrating open science education into an undergraduate health professional research program.

Objective: Open science (OS) is a global movement focused on improving research equity, reproducibility, and transparency of research outputs in publicly funded research. While OS education in academia is becoming more common, examples of health sciences librarians providing OS training are not. This paper describes how a librarian collaborated with teaching faculty and a research program coordinator to integrate an OS curriculum into an undergraduate professional practice course and assess students' perceptions of OS after participating. Methods: A librarian developed an OS-specific curriculum for an undergraduate professional practice course in Nutrition. This course is part of the First Year Research Experience (FYRE) program, which is integrated into 13-week undergraduate courses to introduce students to core elements of the research process in their first year of study by carrying out a research project. The OS curriculum included an Introduction to OS class, a requirement that students share their research outputs in the Open Science Framework, and an assignment asking students to reflect on their experience learning about and practicing OS. Twenty-one of 30 students consented to having their reflection assignment undergo thematic analysis. Results: Students indicated transparency, accountability, accessibility to research outputs, and increased efficiency as positive attributes of OS. The time commitment, fear of being scooped, and concerns over having research be misinterpreted were considered negative attributes. 90% (n=19) of students indicated that they intend to practice OS in the future. Conclusion: Based on strong engagement from the students, we believe that this OS curriculum could be adapted to other undergraduate or graduate student contexts where a research project is required.

Health sciences librarians' engagement in open science: a scoping review.

OBJECTIVES: To identify the engagement of health sciences librarians (HSLs) in open science (OS) through the delivery of library services, support, and programs for researchers. METHODS: We performed a scoping review guided by Arksey and O'Malley's framework and Joanna Briggs' Manual for Scoping Reviews. Our search methods consisted of searching five bibliographic databases (MEDLINE, Embase, CINAHL, LISTA, and Web of Science Core Collection), reference harvesting, and targeted website and journal searching. To determine study eligibility, we applied predetermined inclusion and exclusion criteria and reached consensus when there was disagreement. We extracted data in duplicate and performed qualitative analysis to map key themes. RESULTS: We included fifty-four studies. Research methods included descriptive or narrative approaches (76%); surveys, questionnaires, and interviews (15%); or mixed methods (9%). We labeled studies with one or more of FOSTER's six OS themes: open access (54%), open data (43%), open science (24%), open education (6%), open source (6%), and citizen science (6%). Key drivers in OS were scientific integrity and transparency, openness as a guiding principle in research, and funder mandates making research publicly accessible. CONCLUSIONS: HSLs play key roles in advancing OS worldwide. Formal studies are needed to assess the impact of HSLs' engagement in OS. HSLs should promote adoption of OS within their research communities and develop strategic plans aligned with institutional partners. HSLs can promote OS by adopting more rigorous and transparent research practices of their own. Future research should examine HSLs' engagement in OS through social justice and equity perspectives.

Data-sharing practices in publications funded by the Canadian Institutes of Health Research: a descriptive analysis.

BACKGROUND: As Canada increases requirements for research data management and sharing, there is value in identifying how research data are shared and what has been done to make them findable and reusable. This study aimed to understand Canada's data-sharing landscape by reviewing how data funded by the Canadian Institutes of Health Research (CIHR) are shared and comparing researchers' data-sharing practices to best practices for research data management and sharing. METHODS: We performed a descriptive analysis of CIHR-funded publications from PubMed and PubMed Central published between 1946 and Dec. 31, 2019, that indicated that the research data underlying the results of the publication were shared. We analyzed each publication to identify how and where data were shared, who shared data and what documentation was included to support data reuse. RESULTS: Of 4144 CIHR-funded publications identified, 1876 (45.2%) included accessible data, 935 (22.6%) stated that data were available via request or application, and 300 (7.2%) stated that data sharing was not applicable or possible; we found no evidence of data sharing in 1558 publications (37.6%). Frequent data-sharing methods included via a repository (1549 [37.4%]), within supplementary files (1048 [25.3%]) and via request or application (935 [22.6%]). Overall, 554 publications (13.4%) included documentation that would facilitate data reuse. INTERPRETATION: Publications funded by the CIHR largely lack the metadata, access instructions and documentation to facilitate data discovery and reuse. Without measures to address these concerns and enhanced support for researchers seeking to implement best practices for research data management and sharing, much CIHR-funded research data will remain hidden, inaccessible and unusable.

Announcing the Journal of the Medical Library Association's data sharing policy.

As librarians are generally advocates of open access and data sharing, it is a bit surprising that peer-reviewed journals in the field of librarianship have been slow to adopt data sharing policies. Starting October 1, 2019, the Journal of the Medical Library Association (JMLA) is taking a step forward and implementing a firm data sharing policy to increase the rigor and reproducibility of published research, enable data reuse, and promote open science. This editorial explains the data sharing policy, describes how compliance with the policy will fit into the journal's workflow, and provides further guidance for preparing for data sharing.

A model for initiating research data management services at academic libraries.

BACKGROUND: Librarians developed a pilot program to provide training, resources, strategies, and support for medical libraries seeking to establish research data management (RDM) services. Participants were required to complete eight educational modules to provide the necessary background in RDM. Each participating institution was then required to use two of the following three elements: (1) a template and strategies for data interviews, (2) the Teaching Toolkit to teach an introductory RDM class, or (3) strategies for hosting a data class series. CASE PRESENTATION: Six libraries participated in the pilot, with between two and eight librarians participating from each institution. Librarians from each institution completed the online training modules. Each institution conducted between six and fifteen data interviews, which helped build connections with researchers, and taught between one and five introductory RDM classes. All classes received very positive evaluations from attendees. Two libraries conducted a data series, with one bringing in instructors from outside the library. CONCLUSION: The pilot program proved successful in helping participating librarians learn about and engage with their research communities, jump-start their teaching of RDM, and develop institutional partnerships around RDM services. The practical, hands-on approach of this pilot proved to be successful in helping libraries with different environments establish RDM services. The success of this pilot provides a proven path forward for libraries that are developing data services at their own institutions.

A two-tiered curriculum to improve data management practices for researchers.

BACKGROUND: Better research data management (RDM) provides the means to analyze data in new ways, effectively build on another researcher's results, and reproduce the results of an experiment. Librarians are recognized by many as a potential resource for assisting researchers in this area, however this potential has not been fully realized in the biomedical research community. While librarians possess the broad skill set needed to support RDM, they often lack specific knowledge and time to develop an appropriate curriculum for their research community. The goal of this project was to develop and pilot educational modules for librarians to learn RDM and a curriculum for them to subsequently use to train their own research communities. MATERIALS AND METHODS: We created online modules for librarians that address RDM best practices, resources and regulations, as well as the culture and practice of biomedical research. Data was collected from librarians through questions embedded in the online modules on their self-reported changes in understanding of and comfort level with RDM using a retrospective pre-post design. We also developed a Teaching Toolkit which consists of slides, a script, and an evaluation form for librarians to use to teach an introductory RDM class to researchers at their own institutions. Researchers' satisfaction with the class and intent to use the material they had learned was collected. Actual changes in RDM practices by researchers who attended was assessed with a follow-up survey administered seven months after the class. RESULTS AND DISCUSSION: The online curriculum increased librarians' self-reported understanding of and comfort level with RDM. The Teaching Toolkit, when employed by librarians to teach researchers in person, resulted in improved RDM practices. This two-tiered curriculum provides concise training and a ready-made curriculum that allows working librarians to quickly gain an understanding of RDM, and translate this knowledge to researchers through training at their own institutions.

Adapting data management education to support clinical research projects in an academic medical center.

BACKGROUND: Librarians and researchers alike have long identified research data management (RDM) training as a need in biomedical research. Despite the wealth of libraries offering RDM education to their communities, clinical research is an area that has not been targeted. Clinical RDM (CRDM) is seen by its community as an essential part of the research process where established guidelines exist, yet educational initiatives in this area are unknown. CASE PRESENTATION: Leveraging my academic library's experience supporting CRDM through informationist grants and REDCap training in our medical center, I developed a 1.5 hour CRDM workshop. This workshop was designed to use established CRDM guidelines in clinical research and address common questions asked by our community through the library's existing data support program. The workshop was offered to the entire medical center 4 times between November 2017 and July 2018. This case study describes the development, implementation, and evaluation of this workshop. CONCLUSIONS: The 4 workshops were well attended and well received by the medical center community, with 99% stating that they would recommend the class to others and 98% stating that they would use what they learned in their work. Attendees also articulated how they would implement the main competencies they learned from the workshop into their work. For the library, the effort to support CRDM has led to the coordination of a larger institutional collaborative training series to educate researchers on best practices with data, as well as the formation of institution-wide policy groups to address researcher challenges with CRDM, data transfer, and data sharing.

Practicing what we preach: developing a data sharing policy for the Journal of the Medical Library Association.

Providing access to the data underlying research results in published literature allows others to reproduce those results or analyze the data in new ways. Health sciences librarians and information professionals have long been advocates of data sharing. It is time for us to practice what we preach and share the data associated with our published research. This editorial describes the activity of a working group charged with developing a research data sharing policy for the Journal of the Medical Library Association.

Improving data collection, documentation, and workflow in a dementia screening study.

BACKGROUND: A clinical study team performing three multicultural dementia screening studies identified the need to improve data management practices and facilitate data sharing. A collaboration was initiated with librarians as part of the National Library of Medicine (NLM) informationist supplement program. The librarians identified areas for improvement in the studies' data collection, entry, and processing workflows. CASE PRESENTATION: The librarians' role in this project was to meet needs expressed by the study team around improving data collection and processing workflows to increase study efficiency and ensure data quality. The librarians addressed the data collection, entry, and processing weaknesses through standardizing and renaming variables, creating an electronic data capture system using REDCap, and developing well-documented, reproducible data processing workflows. CONCLUSIONS: NLM informationist supplements provide librarians with valuable experience in collaborating with study teams to address their data needs. For this project, the librarians gained skills in project management, REDCap, and understanding of the challenges and specifics of a clinical research study. However, the time and effort required to provide targeted and intensive support for one study team was not scalable to the library's broader user community.

Data Day to Day: building a community of expertise to address data skills gaps in an academic medical center.

BACKGROUND: The New York University Health Sciences Library data services team had developed educational material for research data management and data visualization and had been offering classes at the request of departments, research groups, and training programs, but many members of the medical center were unaware of these library data services. There were also indications of data skills gaps in these subject areas and other data-related topics. CASE PRESENTATION: The data services team enlisted instructors from across the medical center with data expertise to teach in a series of classes hosted by the library. We hosted eight classes branded as a series called "Data Day to Day." Seven instructors from four units in the medical center, including the library, taught the classes. A multipronged outreach approach resulted in high turnout. Evaluations indicated that attendees were very satisfied with the instruction, would use the skills learned, and were interested in future classes. CONCLUSIONS: Data Day to Day met previously unaddressed data skills gaps. Collaborating with outside instructors allowed the library to serve as a hub for a broad range of data instruction and to raise awareness of library services. We plan to offer the series three times in the coming year with an expanding roster of classes.

Evidence-Based Management Of Caustic Exposures In The Emergency Department.

Caustics are common in household and industrial products, and, when ingested, they can pose a significant public health risk. Caustic exposures in adults typically present in the setting of occupational exposure or suicide attempt; exposures in children occur most often by unintentional ingestion. Caustics cause local damage upon contact with tissue surfaces and can lead to systemic toxicity. Endoscopy is recommended in all intentional ingestions (and many unintentional ingestions) to grade injury severity, determine treatment options, and assess prognosis; however, it is generally best performed within 24 hours post ingestion to avoid risk of perforation. Radiography and computed tomography may also be used to visualize injury in certain cases. This review examines the pathophysiology of caustic exposures, their clinical presentations, and the most current evidence on recommendations for decontamination, surgical consult, treatment, and disposition.

COST SAVINGS AND PALLIATIVE CARE REFERRALS FROM THE EMERGENCY DEPARTMENT.

Early palliative care consultation ha the potential to provide comfort to patients and families, and decrease costs and length of stay.

Starting the data conversation: informing data services at an academic health sciences library.

OBJECTIVE: The research obtained information to plan data-related products and services. METHODS: Biomedical researchers in an academic medical center were selected using purposive sampling and interviewed using open-ended questions based on a literature review. Interviews were conducted until saturation was achieved. RESULTS: Interview responses informed library planners about researchers' key data issues. CONCLUSIONS: This approach proved valuable for planning data management products and services and raising library visibility among clients in the research data realm.

Sizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study.

OBJECTIVE: This study informs efforts to improve the discoverability of and access to biomedical datasets by providing a preliminary estimate of the number and type of datasets generated annually by research funded by the U.S. National Institutes of Health (NIH). It focuses on those datasets that are "invisible" or not deposited in a known repository. METHODS: We analyzed NIH-funded journal articles that were published in 2011, cited in PubMed and deposited in PubMed Central (PMC) to identify those that indicate data were submitted to a known repository. After excluding those articles, we analyzed a random sample of the remaining articles to estimate how many and what types of invisible datasets were used in each article. RESULTS: About 12% of the articles explicitly mention deposition of datasets in recognized repositories, leaving 88% that are invisible datasets. Among articles with invisible datasets, we found an average of 2.9 to 3.4 datasets, suggesting there were approximately 200,000 to 235,000 invisible datasets generated from NIH-funded research published in 2011. Approximately 87% of the invisible datasets consist of data newly collected for the research reported; 13% reflect reuse of existing data. More than 50% of the datasets were derived from live human or non-human animal subjects. CONCLUSION: In addition to providing a rough estimate of the total number of datasets produced per year by NIH-funded researchers, this study identifies additional issues that must be addressed to improve the discoverability of and access to biomedical research data: the definition of a "dataset," determination of which (if any) data are valuable for archiving and preservation, and better methods for estimating the number of datasets of interest. Lack of consensus amongst annotators about the number of datasets in a given article reinforces the need for a principled way of thinking about how to identify and characterize biomedical datasets.